Living with LAM can mean keeping track of a lot. Medications and lab work. Lung function and oxygen levels. Kidney monitoring. Symptoms. Appointments. Questions for your care team. For people living with a rare disease, managing all of that information can become a job of its own.
One member of the LAM community recently decided to build a tool to help.

Earlier this year, when Shauna Mae was diagnosed with LAM, her husband, Ami, watched as she navigated the many details that come with managing a rare, progressive lung disease. As someone with a technology background, he saw an opportunity, to create something that could make that process a little easier.

The result is LAM Companion, a free iPhone app designed to help people living with LAM organize and track important health information in one place.

The free app includes tools for tracking medications and trough levels, blood work, lung function and oxygen, kidney (AML) monitoring, symptoms, and appointments. It also includes a brief daily check-in and the ability to create a summary that can be shared with a healthcare provider, helping patients make the most of their appointments.

The app was shaped with input from women living with LAM. Before its official release, nearly 40 people participated in beta testing and provided feedback on what was helpful and what could be improved.

That kind of community involvement is something worth celebrating.

LAM Companion is one example of a community member using his own skills and personal experience to respond to a need he saw firsthand. We are once again inspired by the generous and ingenious nature of the LAM community.

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LAM Companion is not a substitute for medical care, and users should continue to work with their healthcare providers to make decisions about their health. As with any health tool, people should consider whether it fits their individual needs and discuss questions with their care team.

For those interested in learning more, LAM Companion is available at www.lamcompanion.com and through the Apple App Store.

The LAM Foundation is pleased to share resources created within the LAM community that may help people navigate life with LAM. From research and advocacy to peer support and practical tools, progress often begins when someone recognizes a need, and the community comes together to help meet it.